Dylan is a 16-year-old, smart, sassy, and energetic young man. He loves all things superheroes and is dedicated to keeping his friends and family safe with his superpowers.
Dylan made his grand entrance into this world on New Year’s Eve 2007.
There were no complications with pregnancy or delivery, however, we quickly noticed that something was just off.
Dylan started experiencing what looked like a repetitive twitch shortly after birth. He was immediately taken to the NICU for further evaluation and testing.
Our day-to-day lives changed as soon as Dylan was born. We spent the first few days in the hospital with him, then rented a long-term stay hotel room nearby and traveled back and forth to the hospital every two hours to feed him. After 8 days in hospital, we were notified that Dylan had experienced a stroke in utero. This was causing him to have seizures. Additionally, Dylan would live with cerebral palsy and might be severely disabled.
I was so young at the time, just a month away from my 22nd birthday. Dylan was my first child, and hearing that he would never experience a typical childhood and could be severely disabled for the rest of his life hit me like a ton of bricks. I was so afraid. Not only for Dylan but for myself. How was I supposed to handle this, caring for a disabled child? What was our life going to be like? Can I even do this?
Once Dylan came home we settled into our new routine of weekly therapies and doctor appointments. This new chaos was our life now.
At 10 months old Dylan’s seizures seemed to subside. Then at the age of 3, Dylan experienced his first grand-mal seizure, leaving him in a postictal state for more than four hours. This horrific experience started our journey to an LGS diagnosis.
One seizure led to another. Then a new seizure type. New medications. More seizures! More meds! It just seemed to keep going and going. No matter what we tried he kept having more seizures. He was experiencing multiple seizure types and hundreds of seizures a day.
I felt so overwhelmed with fear… I thought Dylan was slipping away from me. When he wasn’t seizing, he was zombied out on medication. I felt like I was going to lose him, living in constant fear of the next seizure.
I became an around-the-clock nurse for our toddler son. What little normalcy that we had come accustomed to was out the window. Our house was now filled with medical and safety equipment. The sounds of machines beeping became a symbol of peace and now brought comfort to my husband and me.
At this point, Dylan was experiencing weekly tonic-clonic seizures. Additionally, he was having daily myoclonic and atonic seizures. The atonic or “drop seizures” were the worst. He was having hundreds a day. He would be trying to walk and would drop to the floor, like a little rag doll. This was causing increased injuries and became a serious safety concern.
As things progressed we also started to notice what seemed like just spacing out. But when Dylan would do this, he would not respond to us. After discussion with our neurologist and some additional testing, we were updated that these were actually absence seizures.
Dylan is now 6 years seizure free. He is in the 10th grade and attends a regular high school in a special education classroom with the assistance of a 1:1. He can walk, talk (will talk your ear off), run, use the restroom, bathe, and even take his meds with minimal support. He is independent, often reminding us that he can do things on his own.
Our journey has not been an easy one. From being told our son would never walk or talk or have any type of independence, to reaching toddler milestones. Then with seizures out of control, our walking, talking, and toileting toddler started regressing. He was back in diapers and crawling like a baby.
Now, I am the one struggling to keep up with him!
Children with special needs have a unique way of helping you to look at life a little differently. Not once, ever, has my child complained about all the chaos in our lives. He takes each obstacle placed in front of him with an “I got this” type of attitude. And why wouldn’t he, he is a superhero after all!
As Dylan would say, “Never Give Up”.
-Written and submitted by; Dylan’s mom, Kayleigh
Updated 09/16/24 (KK)